Tuesday, June 28, 2011

Wow! It has been a long time since our last post. I guess that means we are really busy with our new addition to the family. We were blessed on May 17th with our baby boy, Trew Duane Arthur. He weighed 7lbs 14oz and 19inches long. He's such a good baby and has been a huge blessing to our family! Most think that he looks like his dad, but I am hoping that might change so I could get one child that looks like me!! (not looking real promising) Trinity and Aubree love him so much and are big helpers! Trinity likes to steal his pacifier from him, but we are working on that :) Aubree is a little momma to all her siblings and this helps mom out a lot. We are very blessed to have such a wonderful family!!!

Last Monday we had an appointment with Trinity's Orthopedic Surgeons. Not great news unfortunately :( To better explain our appointment I am going to type right from the dictation of Dr. Walker."On examination today, Trinity was examined by Dr. Koop and myself. Inspection of her back reveals once again that she has a large left thoracolumbar prominence. She has a deep right waist crease. With traction under axilla and pressure over the lumbar spine, there is moderate flexibility and the curve can be improved. Examination of her hips reveals that she does have a mild hip flexion contracture of approximately 5 degrees on the right and 5 to 10 degrees on the left. Her previous x-rays were reviewed including her sitting AP and lateral x-rays out of her braces on April 21, 2011, as well as the traction film. Out of the brace, her curve measures close to 85 degrees from approximately T8 to L4. Her traction film shows this improved to approximately 60 degrees.At this time, it would be reasonable to proceed with surgery since bracing is no longer effective. If the curve is not addressed, it would likely get progressively worse and eventually lead to greater problems with regard to sitting, skin issues, and potential other longer-term issues, such as pulmonary or cardiac problems. In light of her young age and size, some form of surgery to preserve growth would be preferred. There would be options of possible single or dual growing rods versus VEPTR therapy. In specion of her skin and soft tissues show that she does not have a great deal of soft tissue coverage. Dr. Koop and I agree that some form of a "growing rod" type system would be our preferred choice. However, both types of implants have issues or concerns. First of all, there would be a potential risk such as infection, rod breakage, or loss of fixation to the spine either proximally or distally at the upper or lower parts of the spine. In addition, we would have the initial surgery and most likely be able to put in a single growing rod. This may mean that she would need to have continued use of a brace. Eventually, she would potentially have a second growing rod placed if she had adequate soft tissue coverage and size. Furthermore, the goal would be to preserve her growth. She would need to have a subsequent scheduled lengthening every six months to lengthen the implants. However, if an unscheduled problem or complication arose, such as infection, loss of fixation, or a broken implant, then she might need to have an unscheduled or unplanned procedure. Ideally, we would try to preserve her growth for at least the next three to five years. If we can preserve growth until she is age 8 or older, then she would potentially require a definitive fusion of her spine at that time. If we encountered overwhelming complications, then we many need to abandon the implants and remove them."So there it is the plan going forward for Trinity. However, I will be back this month while Shannon is in Alaska and have scheduled an appointment with a doctor in Iowa City. We feel like something this complicated needs to have a second opinion. If anything to give us peace of mind. The surgery is scheduled for September 29th. We wanted to get it on the books since both surgeons have conflicting schedules. This is a huge decision for our family. We would greatly appreciate your prayers as we get the second opinion, but also pray for the doctors and that they would have confidence in this surgery and that God would guide them moving forward.

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About Me

I am a stay-at-home mom who is blessed with Aubree (9), Trinity (7) and Trew (4). Shannon and I were blessed with our middle daughter, Trinity, that was diagnosed with Spina Bifida when I was 20 weeks pregnant. We pray that through our blogging it helps in communication about what is going on with Trinity and our family.